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Paradise Found – A Girl with SMA goes Crabbing

February 24, 2016

By Alyssa Schwartzenburg ~

A Sportsman’s Paradise. That’s what my home state of Louisiana is often called. I always loved being outside, ever since a little kid, but the outdoors always seemed far away for me. The reason? I have this neuromuscular disease called SMA, or Spinal Muscular Atrophy, which progressively reduces my ability to use my body’s muscles. The tissue shrinks, hence the term “atrophy,” and it also affects my immune and respiratory systems. So, sitting in the cold, rainy woods during the early mornings of hunting season seemed risky. Growing up, I spent a lot more days in the hospital than I did outside it felt like. This is why for a long time I never saw myself truly being able to be a part of the Sportsman’s Paradise.

Of course, with the outdoors being such a huge part of the Cajun culture, I had to attempt it. Being bound to my electric wheelchair by age six, paired with my limited range of motor skills and atrophied muscles, I knew there was no point in entertaining the crazy thought of being able to hold a heavy gun so I tried my hand at fishing first. After losing a few rods and reels to the water when the fish proved themselves stronger than my grip, it was evident that this may not be my niche either.

I’ve always enjoyed the idea of nature trails and hikes, too. We tried that next, but after my friends and I got lost in the woods in search of a “wheelchair friendly” shortcut to the existing nature trail, it lead us to a narrow dirt path bordered by steep drop-offs surrounded by water, I decided this may not be the right thing for me either.

Although I never completely gave up on fishing and enjoying the outdoors, for a while I quit searching for my place in it. Being the realist that I am, I decided it wasn’t practical to think I could do anything with all my limitations. Sure, I could have people help me every step of the way to get the end result I wanted, but that wouldn’t make me feel like it was my accomplishment. With so much of my life being dependent on others, I’ve always craved independence any way I could get it. If I couldn’t do the majority of the work involved in catching a fish or shooting wild game, then I didn’t think I could take credit for it.

Then one day when I was around twelve years old, my dad said “We’re going crabbing.” I didn’t know what to expect, but I’ve always been up for new experiences. So… the next thing I knew I was being strapped into this rigged-up car seat in our boat and driven out across the bay into the middle of nowhere with some of my dad’s buddies. When we reached what appeared to me to be this huge island of mud, we pulled up to the shore and anchored. My dad promptly jumped out with this little lawn chair, planted it on the shore and then planted me in it. That’s where I sat, on one of my first real trips outdoors, with my feet in mud.

At first, it seemed like one big pointless mess. I watched my dad’s friends tying chicken necks and other chunks of meat to strings and attaching them to some sticks they sank in the mud along the bank. This seemed crazy to me, but when I saw how fast their baits started working, like within 10 minutes, it was game on! There were crabs coming toward me holding onto the bait being pulled in, just waiting to be scooped up by our nets. It was like nothing I’d ever seen before in my tiny suburban neighborhood. Some of the crabs were literally wandering around my feet. I was in heaven.

As I watched closely how the others were catching what would later be our dinner, I noticed the times in which the crabs got away. I saw that those who caught the most were the guys who moved slowly and with small movements when leading them in, all the while keeping an eye on the bait. I thought I might actually be able to do that. And I discovered something else that was weird. Anytime after that day, when someone asked what I’d done, I was strangely proud to tell the story of how my shoes had gotten so muddy.

I began thinking that if I were on a pier where I could have mobility in my wheelchair, I could easily reach down to slowly pick up a string and pull a crab into a net. There was no heavy lifting required and no need to be quick, making it a perfect setup for someone with limited motor skills like me.

On my second trip out, sometime later, I went crabbing with some of my own friends. I leaned down and pulled in the string holding one of the baits we’d set that had a customer on it. I slowly brought him in, underwater, inch by inch while my friend held the net at the ready just under the surface. Once the crab was positioned right at the net’s opening, I shouted “Go!” and my friend swung the net upwards, catching our first crab!

At this point I could finally stop holding my breath and let out a good victory shout! I was so excited and could feel my adrenaline pumping like crazy. We stayed out doing this over and over for several hours, although it didn’t feel like it was that long. I don’t quite remember how many crabs we caught that day, but it didn’t matter.

It was amazing to me that I could actually do something outdoorsy. (I know now that my dad made a habit of stopping on the way home to buy more crabs so we could have a feast of celebration when we got home. As a child of course, I just assumed we were amazing crabbers!) I finally felt like I was actually kind of good at something, and we were going to eat something I’d caught! I was finally taking part in this Sportsman’s Paradise I call home.

Although SMA is a progressive disease, I feel that the older I get the more I learn about myself and my place in the world. The more I figure out ways I can be a part of this outdoor culture I love. With the technological advances of today, I’m sure there are many more ways that I can do the things I’ve always wanted to. I’m not waiting anymore though.

Out there, I discovered that I’m still that little girl who is always up for adventure, wanting to live life to the fullest, and I never want to lose that. Now I’m spending my time thinking about what the next one will be. Hopefully I’ll be able to share my first experiences with others who were in the same place I was, needing a little motivation to find their place in what I call the Sportsman’s Paradise.